Sunday, January 29, 2012

Preparing For A Flare

Having ra requires one to be on top of their game with planning. So often we are left wondering when, where, and how a flare will arise. We might never find definitive answers to the when, where, and how of a flare but rest assured if you have ra, you will get a flare.

Often a flare can put us out of commission for days on end. If we are lucky our flare may last for just a few hours or if we aren't so lucky, they can last months. And this is precisely why planning for a flare is so critical. We already know that a flare can rob us blind. It can take our happy disposition, it can steal away our determination, it can humble us with pain but it need not completely put you into a stress meltdown with wondering how in the world am I going to do anything with this flare.

*First recognize that at some point you WILL get an ra flare. Come up with your ra flare plan now. Don't wait until you are in a flare because it is too late at that point.

*If you work, know your employer's sick day policy inside and out. Try to save these sick days for yourself rather then for your children if you have them. Ask your husband or wife, if you have one, to take his/her sick days to cover the children when they are sick. This way you have your sick days available for yourself. I can't tell you how many times when I was working that I took the sick day for our childrens' doctors appointments, dentists appointments, and to be with them when they were sick and had to stay home. And needless to say, when I was in a horrible flare, I was forced to drag myself to work because I had no sick days left. Another option here, if you are fortunate enough, is to ask the grandparents to step in when the children are sick or need regular medical care. Save those sick days for yourself! Now in reality some companies will make you forfeit your sick days at the end of their fiscal year. Check your company's policy on this and if they do make you loose your sick days, then as you approach the end of the year, use them up for your own doctor's appointments, etc. First you might as well use them and not loose them and second most health insurance policies also reset deductibles at the onset of a new year. You will kill two birds with one stone by doing this process. Just be sure to schedule your own yearly medical checkups ahead of time. You can always cancel them if you must push them off.

*Talk with your doctor AHEAD of time about what you should do when you experience a flare. Ask them specifically what medication you can take for the flare, how do you reach them if it is urgent (and yes this includes weekends and after regular office hours). Ask them if they will be willing to call in a prescription for pain medication when you are in a flare or will you have to come into their office and ask them what their course of treatment will be to help you overcome this flare. I DO NOT like the practice of an ra patient having to drag themselves into their doctors office when they are in a horrific flare. That to me is just cruel and unusual punishment. If your doctor is not willing to tell you now what they will do for your flare when you should get one, ask why they will not come up with a plan. If they still give you lip or phoo phoo you off, find another doctor and do so now. Your main objective is to stay employed and it is their job to help you do just this! And please tell them I said exactly that :-)

*Stock up on whatever it is that will help you to manage the flare. This includes: any OTC medication that your doctor suggests, ice and hot packs to use on your joints, a heating pad, loose clothing that is appropriate for work (or if you aren't working comfortable for around the house), very comfortable shoes, a hair style that you can do when your arms don't work right and supports for your joints if these help you. For my most recent bad man flare (sorry guys) I wore a jogging outfit. And I mean I wore it to bed also. This saved me from changing into pjs and allowed me only one change of cloths per day. I wasn't going outside anyway and my jogging cloths are loose, comfy and presentable should I get that unexpected knock at the door.

*Have a backup plan on how you will get to work if you must. Can your husband drive you if your flare is to bad to drive? Can you car pool for a few days with another co-worker? Or the best case scenario, can you work from home? If you have one of those employers that you feel comfortable with and they already know about your ra, asking if working from home might be an option depending on the type of job you do. Or perhaps you could work part time for a few days until you get over the flare. The main point here is to think ahead and plan on paper what you would do if you had a bad flare. Ask yourself how would I get to work if I couldn't drive?

*Have a backup person to cover your children. I am hoping, if you are a parent, that you already have this segment of the ra flare plan in place. And if you don't, you should. In my case, I commuted to work and had my neighbor as my backup plan should my children get sick and needed to be picked up from school. You will need to put this person (I suggest at least two back up people) on the emergency contact list at your children's school. I was fortunate in one respect that my husband and I worked different hours so getting my youngest off to school rested on his shoulders while picking her up rested on my older son's shoulders. But I still had two other people on my contact list….just in case. Having a back up person to help you with your children during a flare is critical. First, if you must drag yourself to work, chances are you will be exhausted once you come home. See if this backup person might not keep your children for a few hours after you get home from work. Or in the case of those that don't work, ask if they can meet the bus or pick the kids up from school. Or maybe they could come to your house, help cook the dinner, get the kids their baths and read them that nighttime story. This way you can rest when you come home from work or continue to rest if you don't work. Flares require lots of rest as we all know.

*Forget the cleaning. It can all wait for another day. If by chance your flare does stretch on for a few weeks or months, call in a housekeeper or ask a friend or family member for cleaning help. Just imagine now who you might rely on for this help and put them on your ra flare plan contact list.

*If you aren't the type that is making multiple meals at once and freezing them, get yourself a list of food delivery places and keep it current. This IS the time to order in food or have your husband pick up food on the way home if he doesn't like to cook. I am all for home cooked meals but when one is in a flare, working, and trying to juggle childcare, cooking is the last thing you should have to worry about. If you happen to be a member of a church, sometimes they have support groups that will step up and bring home cooked meals to those in need. Churches can be a wonderful support family in times of need.

*Plan for animal care as well. If you have a dog, who will walk the dog two-three times a day? If you have a kitty, who will clean the litter box daily? Just asking yourself these questions now will get the planning juices flowing.

Planning for an ra flare is like planning for a disaster. Put your plan in writing, keep it current, and know which direction you will take to help yourself or who you will turn to manage the difficult tasks that must get done while in an ra flare.

I would love to know if you already have an ra flare plan and if you do, what is it? How do you plan on handling your next ra flare?

This is a terrific post, Deb. I wish I'd known how to plan for flares back when I was working and raising my daughter. Instead, I did some of the things you suggested, but I did them on the spur of the moment, hoping that my husband, friends and co-workers could help me. Sometimes they did, but sometimes they couldn't. On those days I simply dealt with the pain and disability while doing everything else, too. No fun.

A good plan is essential. My daughter is grown, now, I'm no longer working and my RA is "under control." Still, it can change at any moment. Your excellent advice still applies. Thank you!

Brilliant post. I'm flaring at the mo and for the first time we tried having a 'flare plan' and it's really helped make everything a bit less stressful. Hadn't thought about planning meds with the doc, it is a complete pain trekking to the hospital in full flare mode, so I'll ask about that. Thanks for the great ideas!

Seeking Solace...I think we autoimmune types become the BEST planners on earth. And not because we want to but because we have to.

Coopy...Well bless your heart. I would climb to the highest mountain if I could to scream it out! But since I can't do that, I do this instead :-) And having Moomee, Mango and Sadie as my sidekicks sure does help :-)P.S. I don't sign up for your giveaways, not because I don't want to but because I want your other viewers to have a better chance at receiving your lovely handmade stuff. And man...you do a bang up job on your stuff! Just beautiful!

Jan...Not that the meds don't help some of us some of the time but I don't no of one single person that has not experienced a flare...even on the best med combo. I often wonder why doctors do this...maybe so we don't get too frightened by it all. And yes, I am trying to be nice here..I suspect it is more med hype by the big companies to sell their stuff but that is another post for another day. Hoping your combo keeps the flares to a minimum...I really do!

Wren....I was like a flish flopping out of the water when I first got ra. Didn't have a clue and swam or flew blind...totally blind. Doctors never clue you in on the importance of planning or any of it. Blogs have been a godsend in my opinion to the newbies coming up in the ranks. And for me it was about.com that saved me the worst of it all. But I do love the personal touch of blogs. Getting to know you all as been a true blessing!

Kate...I am truly sorry for you right now...really and truly. I just hate that we all still experience flares at all. And do have that pain talk with your doc. If you haven't read my post about Pain Management...Let The GAmes Begin...please read it before you have this discussion with your doctor. Knowledge is power in this autoimmune game world. And do feel better. Sprinkling my magic fairy dust all over you right now :-)

Christine...I do know how exhausting all this ra stuff can be and particularly if one doesn't plan ahead with so much of it. We have to buy different things to use, buy different foods to it - often, go to doctors probably 10x as much as the healthy person, and the lists just seem to go on and on. But having plans in place do help alot. When one is in pain, we just can't even begin to think straight. Now if I could just come up with that magic button we could all press to call in the troops during a flare :-)

Good stuff Deb. Most of my flares are mild ones, but I still have a plan very similar to what you have laid out here. To anyone working with a chronic condition, check and see if your company has FMLA. It is a valuable tool that protects your job.

Tharr...you are soooo right about that one. I put up a link at the bottom to a couple of my other blog posts (job ones) and I think I mentioned that element in one of those. I love that you keep me straight on course :-)

Hi Deb. YES I do know of epi-pen and a special one is going to be ordered due to my heart issue. My daughter had to have one due to common allergies and boy did it save her life more than once. GREAT SAGE advise though for those who don't know about them.

I'll be battling the rash until the simponi wanes and waxes it's way out of my system. I have been on the metho injections and my crp hit an all time low 1.18 today. I was estatic. Flare over!! 6 months of flaring... too much for any person. Now it's hand lower leg, feeet and face from the allergy flare up.

No reason why you can't throw your name on any given giveaway. That is the whole point. To have fun and hope to win. But, it's a personal choice and no judgement made.

I'm with you on the allergies vs risk vs benefits. If the metho fails, I may just go the pain med and relaxer route or maybe that's just this mess talking right now. Goodness knows a warrior I am and I don't give in easy.

You would think they could devise less harmful drugs wouldn't you? Sad situationn for auto immuners.

This was a very good read, but (Thankfully ?)I dont have kids and I dont work because of my RA and other health problems. I ALWAYS make sure I have a back up plan, My husband and I have a code word in case we are somewhere and I need to leave, and I always carry a small emerg. kit of my meds in case I need them. Flaring today but not half as bad as yesterday. Soft hugs to all. !

HI Deb, this is great. As someone who had a "bad" night and day yesterday, it was good to have a plan. If you have to go to the hospital, what then? I have to go to the ER a couple of times a year. This week I went to the doctors appt. and was sent to the ER. What to do about the car? We found a glitch in our plan and have to rethink that part of it. Luckily it all worked out. It has been a blessing that we have such giving neighbors since my partner doesn't drive. We also keep comfort food in the fridge for those RA flare days. I only want to eat comfort food: mashed potatoes and tater tots and ice pops and other things that are not very nutritious!

Hi Deb. I wanted to let you know I appreciate you checking in on me. I am only taking metho and pain/relaxers for my ra at this point. I'm a 20 day detox before we go back to enbrel. It has given me the greatest benefit with the least side effects. With metho, we hope great things. Should a break through occur, we have agreed to do short 10 day tapers of pred. I'm on the bottom of a very very long list of people eager to use any more of the agents or infusions after this mess. I'm still on benadryl every four hrs but the rash stayed to my neck and face today and only on the last hour or less before needing to take my ben. I'm hoping this is a good sign.